By Heather O.
I have debated whether or not I wanted to post this on MMW, but I decided in the name of “raising awareness” I would pass on the address of a new blog dedicated to PKD, a.k.a. Polycystic Kidney Disease. Polycystic Kidney Disease is the most common genetic, life threatening disease affecting more than 600,000 Americans and an estimated 12.5 million people worldwide - regardless of sex, age, race or ethnic origin. In fact, PKD affects more people than cystic fibrosis, muscular dystrophy, hemophilia, Down syndrome and sickle cell anemia — combined.
The blog is called Living with PKD.
Who runs this blog, you may ask?
(Deep Breath)
I do.
I was diagnosed with PKD 6 months ago, and haven’t quite known what to do with it, really. Then I attended the PKD Foundation conference last weekend, and realized that there are few cohesive online support groups for patients with PKD. There are some, but not many, and no blogs that I could find. I’m lousy at fundraising, I stink at organizing walks, and I certainly ain’t no “chapter leader”, but I am good (read ‘mildly obsessed’) with blogging, and if running and maintaining a blog can help raise awareness, well, that’s something I can do. I threw out the thought to a couple of folks at the conference, and they seemed to think it was a good idea. So, I started one. There you go.
I probably will not blog about PKD here at Mommy Wars. I think this should remain a place where we primarily discuss issues facing us as women trying to raise our families in righteousness. But I felt that I would be remiss in my “raising awareness” duties if I didn’t take advantage of an established readership to talk about PKD. Yes, ladies, I am bodly, shamelessly using you. Sorry.
I don’t expect that everybody here will actually be interested in a blog about PKD. After all, there are few things more depressing than reading about a disease you don’t have. But, like I said, it’s a start in introducing people to this very common yet largely unheard of condition. So, um, I guess this is the part where I say “Tell your friends”, and especially if you know somebody with PKD. Maybe they will thank you for it.
I’ve never heard of that disease, so you just raised my awareness a big notch. I think blogging about it is a wonderful idea. As a diabetic, I know what a good support it can be to hear from other people with the same disease.
Comment #1 by Susan MJune 27th, 2006 at 2:14 pmYou’ve just educated me as well. Blogging about it sounds great. My mom was affected by the first wave of something that doesn’t seem to have an official name yet but you might know as Chronic Fatigue Syndrome. Some doctors still don’t believe it’s real. My mother was 28 years old, 5′2″, weighed 98 pounds and was too weak to hold her baby. (There’s a flat spot on my skull as a result.) Her doctor told her that she all she needed was to go dancing with her husband.
So yeah, a blog where people can read and discuss what they’re experiencing sounds like a GREAT idea. I know my mom could have used that kind of support. May God bless your efforts.
Comment #2 by Proud Daughter of EveJune 27th, 2006 at 4:22 pmMy son suffers from a kidney ailment (not PKD). There were a few scary undiagnosed days where it was one of the options, but it turned out to be something different. It’s often hard to find others dealing with kidney diseases, as they aren’t outwardly visible. So thanks, I’m not in the same boat, but we’re definitely floating in the same lake.
Comment #3 by AnonymousJune 27th, 2006 at 7:21 pmHeather,
Yeah, this is not all that fun of a topic. Your blogging about it sounds like a good step, for both the online community and for you.
So, if I may speak for all of the people who don’t know anything about this — I’ve gotten the 30-second version of what the disaease does, from Nate, but that’s about it — can you enlighten us a little about the nuts and bolts. (If you don’t mind sharing on-blog).
How does PKD affect everyday life? Can you still [eat cantaloupe, run marathons, read books / whatever other activity]? Does it, um, hurt? Will it?
Obviously, you may want to keep your own reactions private. But a basic profile-of-what-PKD-does would help in raising awareness. Right now you’ve raised your readers’ awareness from “I’ve never heard of it” to “I’ve heard of it, but I have little idea what it is/does.” Keep raising us, Heather!
Comment #4 by KaimiJune 27th, 2006 at 7:57 pmSorry, Kaimi, I obviously didn’t think of giving an explanation. Silly of me, really.
Here’s the ABCS of PKD:
It is a genetic disease that affects both kidneys. It is a progressive disease that causes cysts to grow in both kidneys, as well as the liver, and occasionally the brain, causing brain anuerysms. I don’t have an aneurysm, thank goodness, and those are pretty rare. In some cases, the cysts are mild, causing no effects whatsoever, so many people can live their entire lives with PKD and not even know it. In other cases, the cysts cause the kidneys to grow so large as to impede function. At that point, the only options are kidney replacement therapy, i.e, dialysis or transplant. There is no treatment at this time to slow down the cyst growth, and there is no cure.
Other issues related to PKD are high blood pressure and mild insulin resistance, but here again, every person is different. I don’t have high blood pressure (yet), but in many people, that is the first symptom that leads to the diagnosis. And, of course, with high blood pressure comes a host of other issues, including cardiovascular involvement. So people with PKD have to watch their hearts, too.
Can you do normal things? Sure, absolutely. I can’t eat everything I used to, though. No fast food–too much sodium, bad for the blood pressure. No caffeine or food with caffeine (including chocolate) for me–caffeine can exacerbate the cysts and for me, it does cause pain in my kidneys. It’s not painful all the time for me, but it can be for some people. And I imagine as the cysts get larger, the pain might become worse. Again, it’s different for everybody, and we just wait and see.
So, there you have it, the nuts and bolts. How far has my disease progressed? Fairly far, actually, although my kidney function levels still seem to be normal. Now it’s just a matter of monitoring to see when and if my kidneys fail. In the meantime, I do what I can to keep myself healthy. Actually, we are eating better as a family than we have ever eaten before. Nothing like a life threatening disease to keep you motivated!
Comment #5 by Heather O.June 27th, 2006 at 9:27 pmI’m glad you’re doing this — you are definitely in my prayers today.
I am amazed by what modern medicine has uncovered — just about all of my husband’s male ancestors have died young from heart disease, yet he takes a little pill that has dropped his cholesterol below 100 in just a few months. One can only hope that other advances are just around the corner. But as we tend to hunt for cures for things we KNOW about, raising awareness of PKD certainly can’t hurt.
Comment #6 by DeborahJune 27th, 2006 at 10:15 pmMy best friend has an incurable, slow kidney disease with no cure. I don’t remember what it is called, though.
Comment #7 by JKSJune 27th, 2006 at 11:35 pmI have Graves Disease, which is a thyroid disease that is treatable but not curable.
Many, many of my friends get incurable diseases like this around age 30. It kinda sucks and it does take some adjustment to realize that your body is failing you.
It really does help to learn what you can from others with the same disease. From treatment options to moral support. I’m glad you have started a blog to help reach out to others in a similar situation. Good for you.
Thanks for the link Heather, and the awareness.
I’ll link it up, if that is okay.
Somedays, there just arn’t enough rocks, are there.
I am sorry Pal.
Comment #8 by Lisa M.June 28th, 2006 at 10:57 amWhat a great idea, Heather O! I never thought of blogging as a way of support for a disease, but it makes so much sense. Wishing you the best in your management of PKD
Comment #9 by EmilyCCJune 28th, 2006 at 12:03 pmGood for you on blogging about this AND letting us know! If you need some ideas on fundraising, let me know. I’m not great, but I have had to learn whether I wanted to or not.
We’ll keep you in our prayers.
Comment #10 by Tammy and ParkerJune 29th, 2006 at 4:50 pmI inherited PKD from my mom. I am a grandmother with custody of my 8 year old grandson. I took him to keep him out of foster care. I have 30% kidney function now. I am requesting prayers to keep me alive long enough to raise him. He thinks of me as his mother and would grieve me terribly. If something happens to me, please pray that LDS social services and my church friends will find a family that will love him as I do.I’m having a hard time finding comfort, although I do have faith that Heavenly Father will make sure he is taken care of. Please pray for us.
Comment #11 by Marilyn ShuckOctober 28th, 2011 at 4:05 pm